I am so happy that I have the opportunity to work with many non-profit organizations. I feel like I’m called to do something positive that will help our veterans and/or the community. I have always had the passion for serving others and am so grateful that at this point in my life I am able to do so. One non-profit organization that I happen to be a part of, thanks to the American Legion Auxiliary Unit 392 in Panama City, is the Booyah Veterans Bus Project.

The Booyah Veterans Bus Project started as a story, shared by Pam Hilburn-Mathis to Shane Johnson owner of Booyah Mortgage, about a woman, Ellen Gilbert, who was called to serve our veterans. Ms. Ellen, who is 70 years young, was transporting veterans from Panama City Naval Base to the VA Clinic in Pensacola, FL. She would wake up early to get to the Naval Base to drive our veterans who lacked transportation over 100 miles to the VA Clinic and had been doing this for many years. Ms. Ellen then noticed that some veterans were walking the night before due to lack of transportation and sleeping on benches so they would be at the Naval Base in time to meet the bus. So Ms. Ellen started to transport them from their homes to the Naval Base early every morning, sometimes waking up at 3am to make sure every veteran who needed transportation could be picked up, instead of having to walk the day before and sleep on park benches.

After hearing this story, Shane really thought long and hard about this issue and as a Marine veteran was very concerned and knew that there was something that had to be done to solve this situation. Being an entrepreneur, Shane created the non-profit Booyah Veterans Bus Project, whose motto is “Giving a Veteran a hand up, not a hand out.” And with creating an “Army” of volunteers and support the philosophy of “No Veteran left behind!”

This is a 3-phase project:

1st – Awareness. Starting on October 22nd and ending on November 11th, three Marines rucked over 400 miles from Orlando to Panama City, Florida to raise awareness for our homeless Veterans. Followed by a support team in a RV and many behind the scenes, these gentlemen walked 22 miles a day in honor of the 22 veterans who commit suicide a day. Now this ruck will have a 2nd part, where they will ruck from Panama City, FL to San Diego, CA over the course of 3 months.

2nd – Getting the buses out in military areas that provide a place to shower, wash clothes, get personal supplies, and then transportation to the VA Clinics for appointments.

3rd – Develop of a property in Florida that will have many amenities and a 13 week program that help active duty military transfer into civilian life upon leaving the military and then have a job upon completion of the program in the industry they desire with a mentor.

Now this is not an easy task. The first ruck was just the beginning. It gave all of us associated with the project a glance into the life of someone who is homeless. The endless walking, blisters on their feet, times of just complete exhaustion, the change in weather at a moment’s notice, the lack of support for homelessness, just to name a few. This was not an easy task for the three Marines who rucked the 400 miles.

I’d like to thank Shane Johnson, Shawn Moore, Richard “Q” Mccuen; the three Marines who rucked the entire 400 miles, taking time away from their jobs and their families. If you know anything about Marines, you know they are trained to do whatever it takes to complete their mission. They walk and run in all sorts of weather and terrain and they do it as a team, watching out for each other. If you are a homeless veteran, the possibility of having that support is not always there and that is where the Booyah Veterans Bus Project can hopefully fill that void and offer support to our homeless veteran population.

As they prepare for the other leg of the ruck, many more people will walk with them, some for short periods and some during the whole route. The RV will follow containing items they need to complete this mission, blog and make videos covering the ruck, with a team of people who will never give up!!!

What I have learned being a part of this group, is that we are a family. We may not be related by blood, but by the serving in the military, being spouses or family members of veterans, and having the same calling in our hearts to help veterans. We cannot rely on the government to do it for us, we need to take control!!!!!!

Please #getonthebuswithus and follow us on Facebook https://m.facebook.com/getonthebuswithus/ , the website at www.booyahveteranbusproject.com and on YouTube by searching Booyah Veterans Bus Project or Booyah Hike Across America.

Many thanks goes to the support staff and future ruckers who make up the Booyah family, MJ Motta, Ross Sykes, Raymond Tharaldson, Charles E. Anderson, Missy Buchart, Bonnie Harper, and so many more that I probably forgot to name!!!!!!

I am very fortunate to be in a group called Sweat Sisterz, that is made up of local women who lift each other up and encourage each other to live a healthy lifestyle. This involves exercising, group outings, healthy eating, and other ways to live a healthy lifestyle. These women are not catty towards each other nor are they hateful towards each other. Jealousy does not exist in this group of women. It is full of positive energy affirmations and encouragement. This group contains at least 50 to 100 women from various backgrounds, age groups and abilities. Many of these women are my close friends and all of them I can share my experiences, my life, my strengths, and even my failures without judgments placed on me. Also, nobody is left behind during activities, even timed races. Yes, many run them to get their time recorded but come back to help their sisterz, even if they are at the very back of the race.

One of the challenges that I have accepted was from a very close friend of mine, Lindsay Jones,who runs her own blog, moscatomom.com (please follow her blog!). She has motivated me to do things that I thought I’d never could be able to do. The challenge I have accepted from her is what we call #16in16. This means completing 16 5k’s in 2016. With the mobility issues that I have, walking is the best thing for me, so I can continue to keep walking and strengthen my legs. I have accepted this challenge and I plan to complete it. So far I have completed at the least 6 5k’s.

I am not into physical races, those that are scheduled in our area and thousand people attend. I do however, participate in virtual races that the proceeds go to various different organizations. Virtual races are done at your own pace and you order the race medals ahead of time and complete the 5K at your convenience.

Many times I walk these 5k’s with my friends or husband around my neighborhood or I walk them by myself. I have a strong desire to finish this challenge and hope to even go beyond 16 5k’s this year! I will admit I am not the fastest at walking the 5K however I am the most determined. I am determined for myself and for others who may not be able to do a 5K.

Three years ago if you told me I would be doing this I would be laughing at you hysterically. However, after losing weight, working on my balance and the strength in my legs, working out, and the camaraderie that the Sweat Sisterz have brought me, I know that this challenge will be crushed.

Because I have focused my whole life on my abilities rather than my disability, I am able to overlook the fact that I might be slow, that I might be off balance a little bit, and that some days I am just too tired to get up and walk, however my disability will never make me stop trying to achieve goals that I have placed in front of me.

I encourage all of you, whether you can walk or maybe you use a wheelchair or crutches for mobility, to set goals for yourself and reach them. Maybe it might not be doing the 5K or maybe it is doing a 5K even if it has to be an adaptive one. However, setting goals that may be beyond what you normally do will help you overcome so much, both physically and emotionally. As I have stated before in many of my posts and my YouTube videos you are more than your disability, you are more than your diagnosis, you are more than whatever society may have told you!

So not only do I have spina bifida I now have a rare disease called Kienböck’s Disease. It is basically a vascular necrosis of the lunate bone in your wrist which means your bone is dying due to lack of sufficient blood flow. I found out a couple months ago about the diagnosis and I guess I should start at the very beginning.

Late last year, I started developing pain in my left wrist and noticed that I had diminished rotation of my wrist. There was some swelling and some pain but manageable however, it really made me wonder what was going on because I had never felt anything like this before. Unfortunately at the time I was going to a general practitioner who decided to tell me that it was tendinitis.

Now most people get tendinitis of the elbow due to physical activity however, that is not the case for me. I am not a weightlifter, hard labor, or anything that would put this kind of stress on my hand. I do most of the housework, the cleaning, the cooking, the vacuuming, etc; but as for physical strenuous labor that is something that I do not do. So for me I was not satisfied with his doctor’s opinion about what he believed that I had. He put me on some steroids, which I absolutely hate being on, and an anti-inflammatory and told me it should clear up in about two weeks.

Well in two weeks it obviously did not clear up and it actually was getting worse. So he ordered me to go to an orthopedic doctor to see if the doctor could find out more info about what was going on with my wrist.

I did go and see the orthopedic and we took an x-ray and found out that’s my lunate bone in my wrist was practically dead. It is Kienböck’s Disease, which has four stages like cancer and I was at stage 3B. So next was a referral to an orthopedic hand surgeon.

Fortunately during this time I was able to go back to my normal internal medicine doctor who has always been wonderful, both him and his staff, with helping me figure out and navigate my way through medical diagnosis. So we decided that the best hand surgeon for me would be at Andrews Institute in Gulf Breeze Florida.

After a waiting period of a couple weeks during which I had an EMG done by my neurologist, I finally got an appointment with the hand surgeon. At this point I had no clue what was going on. I had never heard of Kienböck’s Disease nor had any of my friends who are in the medical profession. The surgeon looked over my x-rays and requested that we get a CT scan and MRI done of my left wrist. Having insurance is a wonderful thing however, it can create a lag in medical testing, so the testing took a while to get done and sent over to the surgeon.

We discussed many options of what kind of surgery to perform so that my hand did not deteriorate into severe arthritis and that the bone would not break up on me and make my ability to use my hand worse. So after a long discussion and looking at the options while taking into consideration my age and needing to be able to use my wrist, we decided that the best operation for me was a proximal row carpectomy.

So on April 28th 2016 I had the PRC performed. They removed 3 bones including my lunate that had broken up into pieces and capped one of my bones with a metal plate. I wore a soft cast for 2 weeks and now I’m in a hard cast that I’ve had on for about a week. I will note, I will never do this in the summertime, in the South, ever again because the cast is unbearable in the heat!

This surgery hopefully we’ll give me about 15 to 20 years before I have to have a complete wrist fusion. The surgeon and I both hope that within the next 15 years there are more options for the surgeries where we would not have to actually have to do a wrist fusion. So I am praying that technology will advance for this disease in the next 15 to 20 years.

However, I know that sometimes even if you don’t want to do a certain surgery, sometimes the best course of action for long-term care is a surgery that you might not agree with.

There are no known reasons as to why people develop Kienböck’s Disease, even though there are many speculations throughout the orthopedic community. However, there has yet to be a significant study done as to why people develop this disease. The ages range from early adolescent to adults and it does not discriminate. Just like spina bifida it doesn’t play nicely and everybody is different even if they are in the same stage.

I know that this is going to be a long road of recovery and physical therapy for me to get back the use of my left hand however, I will do whatever it takes to beat this!

Just be aware that there are many diseases and birth defects out there that have no explanation as to why they happen and they’re very rare.

Understanding your condition is the most important thing to be able to be your own medical advocate. I have read up on so many articles about this disease so that I can be fully aware of what I need to prepare for in the future. This isn’t going to stop me and it is not going to define me. It will only make me stronger and I will improvise, adapt, and overcome!

Fat Tuesday is the last day of Mardi Gras and last day to party before the start of Lent on Ash Wednesday. Many of you might be familiar with Mardi Gras especially if you live in the south. It is one big party full of floats, costumes, beads, moon pies, and so much more!

Fat Tuesday 2016 was the best experience I’ve ever had during the Mardi Gras season. I was invited by a good friend to take a party bus and go to New Orleans for a whole day to celebrate Fat Tuesday. The bus was full of friends, food, drinks and laughter. It was an amazing experience and I’d like to share the experience with you!

On that Tuesday morning we all met up at the charter bus location before 6 a.m. in the morning. We were all trying to wake up, trying to load all of the necessities that we needed into the tour bus, and accomplish this before our scheduled departure time at 6 a.m. With a little over 40 people that was definitely a challenge that we faced. However, thanks to our fearless leaders who organized the events we managed to leave Pensacola on time to head to The French Quarter in New Orleans. The bus ride was a little over three and a half hours and was full of excitement. Everyone was talking about what the day held for us in New Orleans. It is pretty cool, that by renting a tour bus to attend Fat Tuesday in New Orleans, that you get to start drinking and doing gummy bear vodka shots. We were in a race with another tour bus heading to the same destination to get a prime parking spot in the French Quarter, making it easy for us to participate in the festivities and to make it back to the bus on time.

Now, I will say that I had reservations about attending a full day in New Orleans. However, my friends are absolutely amazing! They know about my disabilities and they know what I’m capable of doing. Plus they know when to push me and one when not to push me.

When we arrived in New Orleans, the 40-plus people on our bus started splitting up into their own groups with their closest friends. I ended up with my tribe of amazing ladies that I have known for a couple years and that I hang out with quite frequently on a day-to-day basis. So we grab the things that we needed to carry around with us and started heading off into the French Quarter to celebrate Fat Tuesday.

We stopped and watch some parades and danced along the streets of New Orleans. Then it became “5 o’clock somewhere” so we started heading down Bourbon Street to go into the bars and to have some fun. And boy did we accomplish that with flying colors!

We stopped many times on our walk down Bourbon Street to people-watch and take pictures. At that moment, I realized that there were many disabled people throughout the streets of the French Quarter having fun with family and friends.

We went to a couple different bars during our time in New Orleans. And I noticed that a lot of bars were grandfathered in and we’re not exactly the easiest accessible for those who are handicapped or have mobility issues. However, they were so accommodating to anybody with a disability. We went to one bar and restaurant and was able to walk up to the second floor via their staircase to go stand outside on the balcony. The staff was so accommodating to try to help me walk up the stairs even though I really didn’t need help because I walk one step at a time, it was nice to know that the staff was there and really cared about their patrons. We took some amazing pictures from the balcony looking down on Bourbon Street watching the crowds of people below, walking and screaming for beads.

We decided, after a wonderful lunch in a hidden court yard to meet up with the rest of our group at Razzoo’s on Bourbon Street. Razzoo’s is known for Amazing Music a huge dance floor and outside Courtyard and a rather entertaining and very fabulous DJ and Emcee. We setup on one of the sidebars and danced and watched people throughout the entire night, not to mention the drinks that we had. It was so nice to be with a group of friends having fun and enjoying life to the fullest. There were so many people there in costumes having fun and all around enjoying the last day of Mardi Gras. I do have to mention that we ran into one of the best shot girls have her address. She was so amazing so sweet and was always available to us when we wanted shots. What was so special about this particular shot girl was that she had the best personality ever end even though Razzoo’s was very busy she stopped and took a selfie with me and my friends.

The day slowly came to an end, or maybe fast depending on how we looked at it, and we needed to head back to the bus to make it on time to leave to go back to Pensacola. I will say that after walking through New Orleans I was starting to get a little bit tired however, thanks to my amazing friends their husbands, and boyfriends; even at my slow pace they kept up with me to make sure that I made it to the bus safely. This is one of the best adventures I have had of this year!

I realized that no matter what medical diagnosis I may have, I am definitely not defined by that diagnosis. I may have Spina Bifida, but it does not and will not ever dictate what I am truly capable of doing. I encourage everyone to focus on their abilities so they can enjoy life to the fullest like I did in New Orleans on Fat Tuesday. Challenges may come your way during events like this when there are tons of crowds, however don’t let that stop you from going and having the best time with your friends!!!

I have been a fan of yours for many years now. I have laughed at your jokes, cried during your TV show when you reunited people, and was amazed by the talented people whom you have picked to play music, sing, and dance on your daytime talk show. However, this last week, I saw something on a show that you produce that did not seem to match what I have seen and heard to be true about you and your beliefs. On “One Big Happy” there was a joke about the female lead taking folic acid because she didn’t what a stupid baby, like a stupid, stupid baby. I was shocked that this was something that was okay to joke about, because it is not okay. Actually to be perfectly honest, it went way over the line.

Folic acid is a vitamin/supplement that women who want to get pregnant or whom are pregnant are encouraged to take in hopes that it will prevent neural tube defects, primarily Spina Bifida (SB for short). SB is a birth defect that is developed within the first 28 days of conception, which honestly most women do not know at that time that they are pregnant. The FDA and the SBA have promoted folic acid in hopes to reduce the number of babies born with SB. SB is one of the most common birth defects and cannot be cured though however it can be managed with proper medical care, early diagnosis and continued medical intervention including but not limited to surgical intervention to extend the life of the individual and treat the individual’s medical conditions that are associated with the diagnosis of SB.

SB is not a death sentence, though severe cases, depending on the type of SB and the locations that it effects related to the spine and the nerves, could result in long-term continuous care. However, individuals with SB are not stupid!! Most individuals whom are diagnosed with SB function at average to above average intellectually. Telling jokes about folic acid when it has been used as a preventative supplement directly connected with SB is absolutely asinine. So many disabilities have been in the spot light, including but not limited to MS, CP, Autism, and even Downs Syndrome and has been a forepaw to joke about these medical diagnosis. However, it seems okay to the writers of this show and to you as a producer to joke about folic acid. This is very disturbing and upsetting to the SB community as a whole.

I am a 34 year old woman, mother, wife, daughter, sister, college graduate, and professional who just happens to have SB. I have excelled at everything that I have done and continue to do so, even when odds are stacked against me and sometimes have to adapt to make things easier for me to accomplish in a world that frowns upon or outcast individuals that are labeled disabled. I have always put my abilities before my disability as have many of my friends. I do not let SB define me, nor will I ever let it define me because I am so much more than a birth defect.

SB happens more than most, including the medical community, are willing to admit. We need more activist telling the facts about this birth defect rather than comedians who think it is a great way to joke about a condition that they seem to know absolutely nothing about and seem not to be willing to learn so they could help a community of individuals that deserve the same respect that others have obtained from their communities and the nation. Not only do we have to fight every day for respect and understanding, as we age we have to fight for adequate health care to continue into adulthood. This is something I myself have been fighting since my early twenties. Unfortunately, the best doctors who treat SB are pediatric doctors and release us at the age of 18 or if we are lucky at the age of 21. This leaves us adults without treatments we deserve and need desperately to continue living a happy fulfilled life with our family and friends.

I would have expected more from an individual, like yourself, whom advocates for many different causes. I would love to believe that your writers and you yourself, did not mean for this joke to have a negative effect on a community of individuals who did not choose to have SB but have learned to embrace it and excel at whatever they decided to do throughout their lifetime. We need advocates whom are willing to put SB in the limelight using factual data to help build more awareness throughout this nation and in the medical community. With all the negative comments and jokes that Hollywood has produced regarding SB, I think it is time for someone to take a stand and offer us an apology. I would encourage you, Ellen, someone who I see as a strong female role model for many, to take a stand for us. I also would suggest that maybe on your talk show, you could highlight those with SB whom have accomplished great things and possibly bring some of us on your show to speak with you and give you the facts about this birth defect that affects many individuals. I know of two other people who would be willing, along with myself, who would love to meet with you and SB. The three of us are trying very hard to change the SB community for the better by making it an easier world for the new generation of children that are being born with SB and making changes in the way the medical community views the diagnosis.

Social media has had some damaging effects on the SB community and it’s very sad to see that individuals in their 20’s who don’t believe independence is possible and continue to live in a world of negativity and depression. We have encountered this all too often and find that these young people are concentrating more on their disability rather than their ability to be great leaders and advocated in their communities and more importantly, in their lives, to better educate expected mothers and grow to be better more productive members of society. I do not want that kind of lifestyle affecting the younger generations. Some of us have worked so hard to push the boundaries of this stigma associated with SB.

I encourage you, Ellen, to really take this to heart and consider what I have asked of you. You know what is like hiding something for many years with the fear of repercussions from people around you, your fans, and possibly your career. However, we respect you even more for being who you truly are, which is, an amazing woman who overcomes any obstacle that you have encountered with determination and laughter. I truly wish you the best and please continue to dance for those of us who are not able to due to our disabilities!!!! Best wishes, always to you, your family, and your success!!!